Biography

Name

Brenda Doremus

Nickname

brenda-doremus

Gender

Female

Location

Iowa

Relationship

Patient

Short Bio

Received 2 new autoimmune diagnosis PSA and Sjogrens in addition to Raynauds and Psoriasis that I’ve had for several years.. Had 1 st CT scan Nov 2020 showed inflammation and probable ILD 2nd CT in July received IPF diagnosis with honeycombing in one area.. pulmonologist is trying to get me approved for OFEV.. meanwhile I’m taking sulfasalazine for inflammation which They decreased dose and I began mycophenalate 3wks ago which is supposed to help the lungs more than the sulfa one..and I also take Otezla for the PS and PSA.. I had a terrible drug reaction to Leflunomide and Hydrochloraquine early December 2020 and also awful reaction to the prednisone they put me on to fix the reaction.. it took atleast 6wks of horrible rash , swelling, and all of my skin peeling slowly off  to get through it.. I’m scared of all of these stronger meds..so far am ok on current ones but when they increased my sulfa one my liver test counts were too high.. we decreased back to beginning dose and liver count improved.. will be tested in about a week after 30 days on mycophenolate. Also was warned about sun UV exposure and ended up with hyperpigmentation and inflammation on forehead.. hands..arms ..back of neck and face and my lips and ears… the major dark and very spotty and red spotted rash is very ugly and hasn’t really faded much..but my major concern was skin cancer and a dermatologist did a punch biopsy and assured me no skin cancer!abut that I have inflammation and a bumpy non contagious kind of dermatitis that may go away on its own or may stick around a few years.. I read about it and it can also show up in your mouth.. Either that same rash or one of my current drugs is causing my gums in my mouth to be super sensitive to so many foods.. sweets.. milk products .. tomatos ..all fruits.. meats are hard to chew and seasonings..and any foods that have crunch… I’m hoping to get some insight in to what to expect and  hope for regarding the  IPF… thanks!

Type of Diagnosis

IPF

Treatment / Medical Facility

Pulmonologist working with Rhematologist for PSA and sjogrens

Current medication regimen

Mycophenolate and Sulfasalazine and Otezla

Lung transplantation status

to be determined

Supplemental Oxygen

no

Are you currently taking an anti-fibrotic medication?

no

How did you find us?

PF News Website

How long have you or the person that you are caring for had PF?

6 mos

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